Sonya's Story
Sonya's Story A Journey Through CDKL5
Sonya's Story was created to spread awareness of a rare genetic disorder known as CDKL5 and all that comes with having a mutation on a CDKL5 gene. Our purpose is to also raise money to help fund research to hopefully one day find a cure so no child has to suffer from debilitating seizures, GI discomforts, Cortical Vision Impairment and various other problems that come with having a mutation on the CDKL5 gene.
814172268
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Phoenix, AZ 85012 USA
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sonyasstory.com
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Drop Down Menu Sunday February 2 2025 Five years Tuesday December 31 2024 2024 My hands hover over the keyboard my mind empty of thoughts. Im stuck at a loss for words. This feels fitting because since I started this blog in 2015 2024 is the first year Ive written only seven entries. The more I try to focus on finding words the more tears fill my eyes and that familiar discomfort in my chest grows.
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